…but I’m not ready to stop looking for a cure

People come to pain management with a wide range of attitudes and expectations. Over the past few months I’ve been reviewing the ‘goals’ that people write in their pre-appointment psychometric questionnaires, and almost without exception people write ‘Reduce my pain’ or ‘Fix my pain’. While they’ll also write down ‘do more’, ‘return to work’, ‘get a life back’ – these things are all ‘provided that…my pain is gone’.

I spent a half hour talking to a man yesterday who has spent seven years searching for firstly ‘the reason’ for his pain, and now ‘the cure’ for his pain. He told me he’s not yet ready to accept that his pain might be permanent. His life over the past seven years has consisted of appointment after appointment with specialists, numerous scans and other investigations, even more medications and medication trials, surgery at least twice, and he still says to me ‘I’m not ready to stop looking for a cure’ – and the killer for me is the next phrase ‘so I can have my life back’.

Now I’m not criticising him, I feel really saddened for him and I wish there was a way to show him his future if nothing changes – because the life he’s living right now is his life, and it’s nothing like what he says he wants in his life. Everything has been put on hold over the past seven years, his job, his family, his intentions to travel, to have a social life, to have choices about what he wants in his life.

I can understand the desire to know what is going on and why chronic pain is. It’s a normal attitude to think that if a diagnosis is made, someone somewhere will be able to ‘do something’. Or is it? Where are the cures for so many chronic diseases? Diseases like diabetes, asthma, chronic obstructive airways disease, rheumatoid arthritis, osteoarthritis. None of these diseases have a cure per se – all of them are simply ‘managed’. So knowing what the diagnosis is hardly leads to ‘cure’ except in a few cases.

Knowing the diagnosis may satisfy the desire to know that ‘it’s real’ – but doesn’t remove the emotional burden of having a disease. I don’t think knowing that you have Parkinsons’ removes the burden of knowing that your physical movements are slowly deteriorating. Knowing that you have Multiple Sclerosis doesn’t lessen that emotional sting of knowing that your life will progressively become slower and more difficult.

And in each of these cases there is a clear range of management options that are usually employed that reduce the physical demands of the disease, and once diagnosed, most doctors will then stop searching for ‘another cure’.

Not so for chronic pain. It seems that in the case of chronic pain, it’s often the health professionals who drive the search for ‘another diagnosis’ to ‘find out the cause’ of the pain – as if we can’t quite accept that the nervous system can have its own dysfunction in just the same way as another body system. And once diagnosed, the management of chronic pain is much less systematic than for many other disorders, so it’s not unknown for people to be given several different ways of managing from a huge load of multiple medications to the minimalist approach of very few and lots of self management.

What should I do as a health professional working in this field when I talk with someone like the man above?

I’m not sure about a ‘rule’, but this is what I actually did do.

I empathised with his distress and worries about his pain

I empathised with his frustration about trying to find the cause and cure for his pain

I asked about and listened to his concerns

I asked about what was important to him and what his life might look like if he was well

I pointed out, gently, the discrepancy between what he wanted and what he had

I asked him whether his search was working for him

I asked him where this left him

With his permission I gave him information about self management and what it might offer

I asked him what he thought was his next best step

I respected his choice to keep looking for his cure but I kept the door open by saying that we were here for him when he’s ready to start to put back the things he’s missing in his life right now

I don’t know whether I’ll see him again, although I said I’d give him a call in April. What I hope I offered him was the chance to feel heard, to look at the discrepancy between what he had in his life and what he wanted, and to respect his decision but let him know we’re still there. I really hope he does find his cure although I’m not confident about it. I do hope we see him again if he doesn’t’get fixed’.

Accepting chronic pain doesn’t mean giving up, but it does mean putting back into life what is important. In the pursuit of something elusive, we can lose sight of what we already have that is good, right and gives life meaning.

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6 comments

Nothing more erudite than fan mail from me, Bronnie. Thanks for another thought-provoking blog. Some good CBT approaches there. Do you incorporate explicit goal-setting into your management at all? What you describe resonates with the difficulties I have working with people with cancer-related disability, particularly spinal cord compression – people who are seeking the ‘magic bullet’ that will enable walking. This becomes such an all-consuming target that introducing alternatives sometime seems very difficult.

Hi Gail! This must be your evening – I hope you believe in balance! Yes, I do use goal setting, but not at this point where I was screening his ‘readiness’ to do self management.
We’ve adopted the ‘stages of change’ model in our screening so that we have people who are ready for self management while leaving the door open for those who are not ready to come back when they want to. Pointing out the discrepancy between what their current efforts are achieving and what they actually want can be one way to help people shift one step further towards readiness.

Ah ha! Now that’s worth pondering. One of those things that, ‘yes of course I knew that’, suddenly makes a different kind of sense coming at it from another angle. Readiness for goal setting (in my case, or therapy, or self management, or whatever in someone else’s). Are there any good papers that you’re aware of? Given the limited life expectancy of my patients, waiting until they’re ready might mean missed opportunities. So how does a therapist nudge someone towards readiness?… Can it be done? Should it be done? (I’m not necessarily anticipating answers, just thinking out loud…)

The best book to discuss the use of motivational interviewing and the ethics of ‘guiding’ towards readiness is Motivational Interviewing in Health Care: Helping Patients Change Behavior (Applications of Motivational Interviewing) by Rollnick, Miller & Butler. The Guilford Press; 1st edition (November 7, 2007). Using motivational interviewing has transformed my practice and made such a huge difference to my stress levels – and I think it’s helped me achieve better outcomes. It’s really asking the person what their priorities are and respecting their choice. While we can point out the consequences of their choices, we can’t actually ‘make’ anyone do anything because, as we know ourselves, we’ll do anything to resist being forced! And resistance is expressed in loads of ways like ‘forgetting’, or being silent and passive, down to arguing or getting angry – and it’s not that we might not believe that what we’re being asked to do is wrong, it’s often that it’s not as important as something else right now. I’ve written about motivation a bit in the blog, if you look under ‘motivational interviewing’ you will probably find something (can’t recall exactly when I wrote it now!). But if you can, read that book, it’s awesome.

This is a hard one to balance out. On one hand, I’ve learned to try to add things into my life again and it’s great, but there are days when all I want is to not be in pain anymore. I think your method was a compassionate one!

Hi Nickie
There is no easy answer – and accepting that you have chronic pain doesn’t mean you have to like it nor wish it could be gone! But it does mean stopping the fight against it and that exhausting process of actively spending your time searching for an answer in the way that it robs you of what is currently good – that can be reduced, giving you time to put the good things back in. All I want to show people like this man is that the door is always open, and we’re here when he’s ready.